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I was away for five days last week. It seemed kind of good timing as LB was a lot more like his old self. I was at the Nordic Network of Disability Research (NNDR) conference in Finland where several papers were about choice, autonomy and learning disabled people.

Rich took my mum and Owen to see LB while I was away. He was fairly disengaged and not doing much. Going to see him yesterday evening, after this break, was pretty disheartening. It made me want to toss the whole choice/autonomy agenda in the nearest skip.

His anxiety levels/aggression and hostility have seemingly reduced. Fab. At the same time, he basically spends every day watching DVDs. Unless there is the option of a trump card outing, a ‘b’ card; burger or bus museum. This is in contrast to his school timetable a few months ago.

We’ve consistently said/thought/believed/argued that LB, and dudes like him, should lead a productive life. [I’m seriously boring myself now saying this over and over again with no sniff of a productive life anywhere in sight round this way, but I refuse to give it up]. Outside of some small and hugely oversubscribed/or hidden away pockets of brilliance, there ain’t much substantive choice for young learning disabled people. Especially with current cuts and welfare reform.

Call me a crappily cynical old baglet (yep, please do, because I’d love to be proved wrong), but it strikes me that the ‘choice/autonomy’ agenda is a bit of a cheap and effective tool really. It doesn’t cost much to ‘choose’ to watch DVDs all day, with an occasional ‘b’ outing. The long term implications (outside of cost – health, social, emotional and political) of people leading lives like this are too enormous to even begin to wince at.

One of the presentations at NNDR (twitter feed #nndr2013), was by Alan Roulstone who talked about choice, autonomy, community and risk. One of his conclusions was the importance of engaging with a “realism that never lets go of ambition” and “ambition that never lets go of realism”. He was weighing up risk and vulnerability in terms of hate/mate/(and general neglect) crime, but I wonder if his focus on ambition is a bit ambitious in reality [sorry]. Ambition, for learning disabled people, is a bit of a stretch. And way too pricey.

There is a new realism for LB though. About doing very little with very little expected.

I ain’t surprised that only 35/1000 ex-Remploy workers have found new jobs, despite the 18 months of ‘individualised support’ offered to them by Maz Miller. I can’t imagine the impact on those 965 unemployed people (and, as importantly, their families). Of losing that structure, social dimension, coherence, and wage. I dread to think how it will affect their sense of self worth, isolation and health. Especially with alternative employment looking an impossibility. Anyone who talks about ‘benefit scroungers’ is talking crap. Apart from a small minority, work is a central focus of human/social life. End of.

I don’t support (or celebrate) the idea of segregated employment at all. I support the right for people to work, regardless of their ability, and this work should be mainstream (whatever that means). But I know that’s an idealistic and, in the current UK economic environment, totally unrealistic position.

Closing the Remploy factories was a financially driven decision. While throwaway and meaningless statements about decreasing segregation were made, it was about saving money. We are no nearer to an ‘inclusive society’ than landing on the moon, finding out what ’causes’ autism, or whether there is life on Mars. Shedloads of money are thrown at the latter two but very little is invested in workable solutions to increase and support learning disabled people in mainstream work.

Until people (learning disabled people, carers/family members, general public, policy makers, practitioners, government ministers) start to talk openly and realistically about the issues involved, nothing will change. It reminds me of my early research looking at the experiences of mothers, learning disabled children and going out in public places. I found there were limits to the tolerance you could expect from other people. The bar is commonly set way too high (for prissy reasons) but, even when lowered, some things ain’t gonna be acceptable. Until we engage with these (sometimes awkward, uncomfortable?) issues, and have some open, creative and realistic thinking about what can work and how, why force (longterm) unemployment on hundreds of Remploy workers?

I’m in favour of inclusive work places. Of course I am. But in terms of inclusive work practices developing in the UK, I’d say we were at a similar stage really (ignoring the unsustainable fluff introduced every now and again) to 30 years ago. Nothing has really changed. Yes, there has been a shift away from institutionalisation but there is plenty of evidence that despite living ‘in’ the community, learning disabled people remain outside of the community, isolated, often victims of hate crime and not in, or even close to, employment.

And employment, or work, is one of the central features of our lives. Something this pig ignorant coalition government wilfully misunderstand, misinterpret and use as a political tool for their own purposes.

Today Remploy employees are striking against the proposed closure of 27 “loss making” factories putting 1421 people at risk redundancy.

Remploy provides employment opportunities for learning disabled people (and so much more). Remploy employees go to work, work and earn money. Ok, it’s an exclusive setting, but, for the time being, the rest of the UK workplaces are exclusive too. Exclusive to people without learning disabilities. Until these workspaces become inclusive, closing Remploy is going to leave most, if not all, of the current employees unemployed.

Many or most Remploy employees will no longer goto work. Structured everyday life, use of space outside of the homes, journey to and from work and social experiences gained on a daily basis will be removed. Many employees will be left with the option of day centres, staying at home or using direct payments to pay someone to take them out somewhere. We all like going out, but as a part of our lives, not as a sole feature. There are also implications for family members who will have to readjust their own lives accordingly.

Many or most Remploy employees will no longer work. The benefits of working are documented in a ton of evidence gathered over decades. I won’t bother to list them here, but the health consequences of not being able to gain employment are also documented. The lack of structure and activity, and the emotional distress caused by the removal of working lives, may have serious health implications.

Most or many Remploy employees will no longer ‘earn’ money. Yes, there will be some financial support but it ain’t the same thing. And no doubt there will be some shenannigens about placing Remploy employees in an inappropriate work category, leading to more punitive sanctions in line with current changes to the benefits system.

So what is going on here? Is the government closing these factories because they subscribe to the vision of an inclusive society in which learning disabled people are supported, welcomed and sustained in paid employment?

Bollocks. It’s all about money. The worth and value of learning disabled people is so low, that keeping (financially) unprofitable factories open, even if they offer some people employment and everything that comes with that, is not an option. But “loss making” in this situation, cannot and should not be measured financially.

The DWP commissioned report into the viability of Remploy opens with the statement;

The views expressed in this report have been based on discussion with Central Management only.

Like this:

Mary Douglas. An old favourite of mine. Author of Purity and Danger. Mary (I think I can call her that) argues we categorise things in order to create a sense of order. That we can’t categorise, is pushed to the margins. And becomes ‘other’, creating feelings of revulsion in “us”. Of matter out of place. Bit like walking round a cattle field then putting your wellies on the kitchen table. Or cleaning the kitchen sink with the toilet brush.

Ah. Why am I rambling on about this? Why indeedy. Because of two articles published today.

“70% [of people on DLA] had lifetime awards, which meant that once they got it you never looked at them again. They were just allowed to fester.”

So here we have the Work and Pension Secretary suggesting that disabled people ‘putrefy and rot’ or ‘generate pus’. Pus. A perfect example of matter out of place. And one that engenders revulsion. Not only that, but disabled people choose to fester and “we just let them”. The old us and them that is becoming the defining feature of this government.

Now it’s not clear whether these disability bullies are part of the “truly disabled” she refers to (the blind who get less than the drug addicts and alcoholics), or the gang of “back ache fakers who stay off work, earning money to do so.” Whatever, they are prepared to take extremist tactics to stop changes to benefits. These tactics? Marching in central London at the weekend.

Being labelled cruel and insensitive to the plight of others is a politician’s nightmare. The disability lobby includes politically-savvy activists who know this, and know just which buttons to press. Like PETA, the animal rights lobby, these campaigners are prepared to fight dirty in their effort to embarrass the authorities into doing a U-turn. Emotional manipulation and shock value are routine in their demonstrations; this will only increase if IDS stands his ground.

Well Odone is, like IDS, reinforcing Douglas’s work very nicely. She talks about playingdirty and compares disability campaigners to animal rights campaigners. I’m making no judgements about animal rights activists here, but I don’t think throwing fake blood on the pavement, or wearing gloves to symbolise cutting off hands, compares to some of the strategies employed by PETA and other organisations. Far from it.

Douglas suggests that ‘we’ can respond to ‘anomalies’ negatively or positively; ignore or condemn them or effectively embrace them by creating a new reality that includes them. Dunk/Odone’s position is clear. Condemnation.

Me? I’m left feeling revulsion. About a government who are increasingly matter out of place.

I’ve been trying to avoid thinking about this, because the future does not look rosy at all. But it’s gotta be done.

The facts:

LB is 17.5 years old.

He can stay in his sixth form until he’s 19.

There is a possibility he can attend a local college for a one year, two day a week, course.

After that, nothing.

Considerations:

What is this funny, hugely bright in some very specific ways (but not in any ways that are recognised in the workplace), young man going to do with his life?

Whose is responsible for his care when he’s an adult?

I dread to think what LB is going to do. His current social worker (soon to be replaced by a transition social worker) said that the best we can hope for, is to make personal contact with a local small business/enterprise and organise paid carers to support him in some activity with them. Wow. The provision of support and services for learning disabled people is clearly cracking in the 21st century. I can’t see how this local work activity (if any were available) can be organised without a huge investment of time and goodwill. Whose time and whose goodwill? And with a high level of ongoing management. Alternatively, he may receive enough of a care package so that we can employ someone to do something with him on a daily basis. Something? What? And where?

Caring for someone in this country is, to be blunt, a pile of crapshite. The use of the word ‘care’ muddies things and allows a persistent level of exploitation that is completely unacceptable. Carers are paid £58.45 per week on the basis of a 35 hour week. How we can possibly distil the work carers’ do, often 7 days a week, on call for 24 hours a day, into a ‘working week’ is plainly wrong. If you earn over £100 a week, you don’t qualify for carer’s allowance. It’s an all or nothing jobby. And as for carer’s assessments (introduced circa 1995) to enable carers’ to say what would make caring easier for them?? I’m still waiting to have one.

Ironically, LB will probably (possibly? who knows with the current cuts in welfare) be given a care package involving direct payments that, in principle, allows him (that is, us) to buy care from external people. These people are currently paid between £7 (daytime) and £10 (evening) per hour. Unlike informal carers, there is a recognition that working in the evenings should involve a higher hourly rate. The rule is that direct payment cannot be paid to anyone living in the same house as the person they work for. Mmmm. Well we wouldn’t want to acknowledge the work informal carers do, would we? Direct payments also involve a lot of bureaucracy, recruiting staff, form filling in, tax, national insurance, and so on. Employing people involves time, interaction and a blurring of public and private boundaries in the home.

As I work full time, I don’t get carer’s allowance. There is no acknowledgement of the work I/we do, and will continue to do, looking after LB. There is no recognition that, unlike most parents of 17 year old children, one of us still has to be at home every day, ready to let LB in or collect him from after school club. This will continue for the next two years until he leaves school. And then what? He will, if lucky, be occupied two days a week at college for a year. No doubt starting around 9.30am, finished by 3pm with extensive holidays thrown in. He can’t be left home alone, so there are serious implications for maintaining full time employment.

I’m not overly optimistic about the paid carer situation. LB’s recent 12 week stint with a ‘peer buddy’, organised by a local care agency, was filled by a 50 year old man. At this point in time, I refuse to even think about a day centre. Years ago, LB used to say that he’d been to day care with Mr Galpin. It turned out that the social services transport he had at the time (the ill bus), collected a very elderly man after LB and they took him to the day centre before taking LB on to school. The thought of a 19/20 year old young man hanging out in that environment is a beyond dread kind of thought. It ain’t gonna happen.

So what are we left with? Fuck all really. Patchy bits of uncertainty and an unacknowledged expectation that parents will do a hell of a lot of work to make do and mend, on a daily basis. As for what LB will do with his life? That clearly is not an important feature of policy or practice.

Well. Where to start with this baby? First, I am going to try not to swear (other than repeating any swears that happened during reported naturally occurring talk. Second, this story follows on from The Atos Questionnaire, so if you ain’t familiar with that sad and sorry tale, click here.

So LB is now in receipt of Employment and Support Allowance (despite a news blackout that he was actually entitled to it).

All good in the end then? Well maybe. If he actually received it.

Today I dredged deep (after a lovely, lovely day at an autism conference in London yesterday) and found the energy? resources? reserves? strength? I don’t know what I found really, just something (which is remarkable after about 14 years of consistently shite support/sevices) and called Jobcentreplus to ask why, after the initial back payment of three months, LB hadn’t received a bean.

“Hello,” said JCP blokey, “I need to speak to LB to go through some security questions first.”
“Mmm.. not being funny, but unless you want to ask some Darth Vader and the Death Star Canteen type security questions, you’re probably better off asking me.”
“I need to speak to LB. He is in receipt of the allowance.”
“He won’t be able to answer your questions. He has severe learning difficulties.”
“Ah.. Oh yes, I see now. I should have asked these questions in a different order, then I would have known. Then I could have avoided that embarrassing question.”
“Yeah.”
“So, let me try and work out what’s happened here then. Oh yes, there is a stop on the account because the sick note provided is dated from 16 November to 16 February. You need to go to the GP and get a medical certificate to cover the period from 16 February.”
“Er, we originally provided an indefinite medical certificate in February and we were asked to get a second one covering November to February. We sent that ages ago.”

Let’s take a moment here to reflect on what I’ve just written.

LB is given an indefinite sick note by the GP. What is an indefinite sick note?

Despite having an ‘indefinite’ sick note, the GP had to produce a second sick note to cover the three months before the original sick note. Backdating an ‘indefinite’ sick note? What does that mean?

[1] and [2] had to happen despite 14 plus years of medical, health and social care reports detailing in painfully minute detail, LB’s ‘deficits and shortcomings’ (in official eyes).

Despite [1] and [2] (and even without [3]) we then get a 20 odd page Atos questionnaire to complete to provide evidence of the efficacy of the ‘indefinite’ sick note.

Well, the swear constraints can fuck right off. This system is beyond shite. And horrendous to experience.

So, back to JCP blokey.

“Oh, I see what’s happened. When they got the second medical certificate, they entered that, and overlooked the original certificate. That’s here but they’ve only entered the November to February dates. That’s why there’s a block on the account.”
“Oh.”
“Mmmm. I need to sort this out.”
“Bloody hell.”
“Well yes, I’d have probably said something similar myself in your shoes.”
“Bloody hell.”
“I’ll email them straightaway to sort this out. It will only take about 3 hours to change it. The account should then be unblocked.”
“When you say them, who do you mean?”
“Oh, the benefits people. That’s who has to sort this out. I’m just a contact person on the helpline.”
“Thank you. Goodbye.”

Now. I ain’t no politician. And I don’t claim to know an awful lot about the structure and process of British politics. Well, barely anything really.

But I do know that, unless you are an exceptional person, if you have the life experience of – veryrich family, public school and Oxbridge education (most likely studying PPE) and straight into politics – you ain’t really going to know diddly squit about anything other than being very rich and privileged. Nothing.

Many of you will be, luckily, unaware of Atos, a French IT company. Googling Atos will produce mountains of complaints and criticisms about Atos Healthcare, a divison of Atos, that has been awarded the contract to assess scroungers’* ability to work on behalf of the Dept of Work and Pensions (DWP). To save you the task, here is a good overview of the Atos crapness. Well this company is raking in the casheroony in a big way. Bit like A4e (Action for Employment) and the infamous Emma Harrison, until recently, Cameron’s families *cough* *cough* *cough* tzar.

So, back to Atos. And LB. Well, as I’ve mentioned here before, I recently found out, through mates (rather than the enormous machinery of health, education and social care services) that LB has been entitled to Employment and Support Allowance since he turned 16 over a year ago. We can backdate claims by three months.

To start the claim, I did a phone interview with JobCentre Plus (JCP) which lasted about 40 minutes and included mind boggling questions like “Who is the head of your household?” The next step was to get a sick note (???) from the GP. He sensibly gave LB an indefinite sick note. This was returned by JCP as it needed to be backdated by three months. Back to the GP for second sick note. Indefinitely sick since November 2011.

So a medical practitioner has authorised LB’s removal from job seeking indefinitely. But that’s no longer enough. There is a Limited capability to work questionnaire to fill in, so that experts (undefined) from Atos can judge whether or not LB has legitimate access to allowances in place of paid employment.

Questionnaires are always flawed but this one is legendary in its crapness. I feel strongly that if someone can’t fill in the questionnaire themselves, because they have severe learning disabilities, then it’s a done deal. Bin the questionnaire, it’s pretty obvious that this person is going to have a limited capability for work. I’m not suggesting at all that people with severe learning disabilities are not ever capable of paid employment, but that some limiting parameters are in place in terms of the engagement with the process. And if they can’t engage with the process, some other poor buggar (often parent) will have to instead to fill it in on their behalf.

Compounding this, the content of the questionnaire is baffling and ultimately meaningless. For example;

Can you learn how to do a simple task like setting an alarm clock or a more complicated task like using a washing machine?

How is setting an alarm clock a simple task? You’ve got to be able to tell the time for starters, before you even turn to the clock. Just a small consideration I suppose in the experts at Atos’ eyes. Teaching LB the time has been an ongoing process for the last 2/3 years and no, the boy ain’t cracked it yet. Let’s park that (minor) detail for now. Do Atos mean a manual alarm clock, where you have to scooby round some second set of hands to the time you want the alarm to go off? Never an easy task. Or a digital alarm clock??? It is ill-thought out nonsense.

The next question is “Initiating actions” and asks; Can you manage to plan, start and finish daily tasks? Possible answers – never, sometimes or it varies. Again, gaping holes here. Do they mean unaided, or with prompts/support? Do they mean ‘sensible’ plans/tasks, like ‘today I’m going to buy some bread and milk’, or less ‘sensible’ plans, like ‘today I’m going to stay in bed and play with my willy all day’? Atos would possibly argue that the text box below each question enables the more nuanced details to be thrashed out, but how is that text going to be measured, counted or made sense of?

Cannot learn or understand how to successfully complete a simple task, such as setting an alarm clock, at all. (15 points)

Needs to witness a demonstration, given more than once on the same occasion, of how to carry out a simple task before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a further demonstration of how to complete it. (15 points)

Needs to witness a demonstration of how to carry out a simple task, before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a verbal prompt from another person. (9 points)

Points mean prizes. Luckily, the details of the point scoring are available on various sites/blogs if you have access to the internet. A lot of people don’t. One of the strong criticisms raised in recent debates around the ‘abuse’ of Disability Living Allowance was that people sought advice, or even paid people, to help them fill in the forms. What the government fail to see, or choose to ignore, is that these forms are so overly complicated, and with hidden agendas, that most people would not qualify for the allowance without the help of people who understand the system and process. Not because they are scamming the system.

By page 15, I gave up with the game. I started to write ‘LB has severe learning disabilities’ in each box. I don’t know how many points that will produce, but I’m willing to take it up with Atos or JCP. It’s a nasty, underhand, thoughtless and ultimately meaningless process designed purely for economic reasons; to reduce costs. The human costs are racking up of course. But hey ho.

*In case you didn’t know, benefit claimants are all scroungers until proved otherwise.

The proposed bedroom tax in the Welfare Reform Bill will see people in social housing docked £14.00 a week if they are thought to be under-occupying their property.

“Get a lodger”, suggested Lord Freud in the House of Lord’s yesterday. Well, the truly noble Lord’s and Baroness’s did a cracking job of pointing out why this was such an unsustainable and destructive idea, so I won’t rehash all their arguments here. (They are handily transcribed here…)

I’ll just leave you with one example* of what this new type of household might look like.

Happy families.

* Apologies for complete lack of diversity… Playmobile really ain’t caught up with contemporary UK life.